Purpose of the group
- Act as a channel of communication between the Scottish Parliament and families affected by rare, genetic and undiagnosed conditions.
- Act as a channel of communication between the Scottish Parliament and those working in the fields of research, treatment, care and prevention of rare, genetic and undiagnosed conditions.
- Monitor and contribute to the implementation of the Scottish Plan for Rare Diseases in Scotland.
- Identify areas where inequalities exist in provision of care for rare, genetic and undiagnosed conditions and campaigning for improvement.
- Examine areas of health and social care policy or service provision relating to rare, genetic and undiagnosed conditions.
Genetic Alliance UK - secretary and treasurer
Autoinflammatory Disease UK
PCD Family Support Group Scotland
Children’s Health Scotland
Hereditary Spastic Paraplegia (HSP) Support Group
Turner Syndrome Support Society
Brittle Bone Society
Sickle Cell and Thalassemia Support Group
Office for Rare Conditions (Scotland)
Primary Immunodeficiency UK (PID UK)
Ehlers-Danlos Support UK
NHS Scotland Laboratory Genetics Consortium
Clinical Genetics (NHS Tayside)
Cross Party Groups and GDPR
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